‘reablement is everybody’s business’ hampshire neurological alliance study day in...

‘REABLEMENT IS EVERYBODY’S BUSINESS’

Hampshire Neurological Alliance Study Day

in collaboration with Hampshire County Council

Anne MeaderChair; Hampshire Neurological Alliance

Secretary; Carers Together

Service User & Carer

Housekeeping

Fire Alarm Toilets Smoking Phones Refreshments

Your local Headway Deborah Robinson, Service Manager, Headway

Portsmouth

Heather Jury, Service Manager, Headway Basingstoke

26/08/2015Reg Company Number 04184335Reg Charity Number 1086140 3

Who are we?• Every Headway is individual and local• Headway Basingstoke leads a Clinical approach

and is based next to North Hants Hospital• Headway Portsmouth is non therapeutic and is

based in a Leisure centre• Headway Southampton


What do we do?We work with

• People in the community who’ve experienced Brain Injury, their families and Carers.

• Professionals supporting those with Brain Injury, GPs, OTs, Physios, SLTs, Case Managers, Residential homes and Rehab Centre's


How do we do it?We work with Service Users to bring cognitive benefit for memory, communication, organisation, executive function and relationships through:

• Cognitive Re-enablement Courses

• Confidence Building courses,

• One to one assessment

• Signposting and support.

We also run social inclusion sessions supported by volunteers and peer mentors where people can begin to take their place in community activities and make friends.


Causes of a Brain Injury• Traumatic: Road Accident, Slip or Trip/ Sports

Injury, Assault• Acquired: Stroke, Cardiac arrest, Encephalitis,

Aneurysm, Hydrocephalus, Brain tumour, Oxygen starvation to Brain


Effects of Brain Injury• Physical disabilities, slowed responses, Loss of

physical sensation, • Poor concentration, Personality changes, Lack of

initiative,• Poor perception and judgement, Poor problem

solving skills, • FATIGUE, Blinding headaches, Poor Memory, Poor

communication


How we can help


Rehabilitation

TherapyCarer Support

Building Confidence

Cognitive Reablement

Life skills

Back to work Volunteering

AdvocacySignposting

What helpsBrain Injury is a hidden disabilityWhat you see is not necessarily

what you get


What helpsSymptoms vary enormously

Even from the same Brain InjuryDepends on age, stage,

support………..


What helps

FATIGUEHeadaches physical exhaustion

From doing too much


What helps

Expect Improvement!Reduce Cognitive deficit by

early signposting to Headway


What helps

Slow simple speech‘But we aren’t stupid’


What helps

Say it and write itWrite down important

information, give sheets of instructions, diagrams,

video 26/08/2015

Reg Company Number 04184335Reg Charity Number 1086140 17

What helps

5 knocks!Say it, hear it, write it,

read it make an association


What helps

3 Slot dayMorning, Afternoon and

Evening

Only do one major thing each day


What helps

Good DietWater and Oil


What helps

Don’t give false hopeBut never say never!!


Referral ProcessReferrals from GPs, Social Workers,

Clinical Nurse Specialists, SLTs, Neuro Psychologists, OTs, Physios and other

appropriate professionals. We do accept self-referral with appropriate backing

from GP.


3 messages to take away• Early bridging to Headway from

Rehab to reduce cognitive deficit• Understanding Brain Injury to build

supportive framework• Support for individuals to engage

with us and avoid crisis point


Finding a pathway through services on a journey with

Huntington’s Disease

Annette ScivierWife, mother and Carer

The start of the journey

• Met when I was age 18,Husband was 22, married 5 years later

• Told that his father had died, 10 years after his parents divorced, his father had become “depressed” and lived at Knowle Hospital until a sudden death when my husband was 18 , having not seen him for about 9 years.

• His father was 49.

The road gets tough…

• Age 32 my husband leaves his career and completes an MSc, whilst I get a new job.

• He leaves 4 jobs in 4 years (and got a new mortgage during 3rd job)

• Our 1st child arrives according to plan -I return to work to pay the bills

…and tougher

• Relationship was strained next 2-3years

• “normal” tiredness and “male” behaviour around the house – eg multitasking, chores

• Washing up skills lacking • Many DIY projects started, not

finished • Mood swings evident between jobs

…ups and downs en route

• Mood swings became aggressive with suicidal threats

• Scary• Attributed to his job not being the

right one, difficult commute, or….lack of job

• Refused to get help…. his medical record may affect job hunting

• Refused to apply for benefits…I had a job

The journey continues…

• I had by now received counselling from 3 organisations

• Our 2nd daughter was born and I returned to work ,my job itself becoming very stressful

• Thankfully we left a crumbling cottage at his next job change

• Left that job twice, half completing a teacher training course three times, before I Googled our problem…..

Diagnosis by Google….

• NOT to be recommended for HD• NOT what my best friend intended

when she said I really needed to find out why my husbands behaviour and movements were odd for 10 years

• Reading the leaflet “behaviour problems” on HDA charity website it suddenly “clicked” in my head what I had been living with

The hurdles of the NHS begin ….• His kind GP accepted my word on the history

without his patient attending and phones a neurologist

• Seeing the patient helps with diagnosis of movement disorder…not easy if you don’t believe you are ill.

• Letters and phone calls from neurology secretary are misunderstood by the patient ( assumed to have intact capacity and organisational skills )

• Bike accident needing stitches convinces him and his family that, yes, something is odd about his balance and twitching

• Spurious blip on an ECG in casualty convinces my husband that return visits to his GP are needed

Lack of signposts for professionals• My husband managed half a neurology

outpatient appointment- long enough to confirm my suspicions

• “open appointment” given to return – DNAx2 • Established that I had been in touch with HDA –I

felt guilty knowing Regional Care Advisor covered 3 counties

• No nurse in clinic to ask if I had any questions or needed information

• No suggestions to his GP on who was available locally, or elsewhere, with experience of HD

Who does what in a challenging illness ? Who guides the way ?• Regional genetics service• National Research team at Queen

Square• Refusals to see adult psychiatrist• Agrees to speech therapist +

dietician but not local neurologist or physio

“Visiting patients with poor insight and who are difficult to engage, is what our team does”

…..The Psychiatrist for Elderly had experience of dealing with this condition – why didn’t anyone tell me ?

How do you know what you don’t know ?

In spite of a wealth of information , where do you start? Who do you ask?

Professionals consider HD to be rare – yet its twice as common as quoted in text books, and as there is no cure – yet – what difference does it make? Why should they bother?

The journey gets harder still

• As a family we strived to focus on some positive times together

• Our understanding of HDs effect on thinking helped us adapt – to a degree , with help from the Memory Service OT

• Refused drugs, consistently • Unable to see the effect of his behaviour

on us • Rational discussion on some points

impossible• Sufferers appear selfish- their personality

changes

• I could not function-off sick• I left my job• Eldest daughter struggled to study A levels • Youngest daughter “tummy ache” refusing

school – worried about daddy, and now mummy

• Agitation worsened when I took kids away for 5 days “respite” and continued to worsen- in front of the kids – it was getting scary again

Gaps in services• Neurology or psychiatry• Adult psychiatry or old age psychiatry –

depends on area• Young Carers between contracts -6m gap• Emotional support for me ( main carer)-

unclear • Carers assessment – 5 phone calls • Websites and services (eg advocacy and

mediation) for dementia and mental health do not consider HD to be part of their remit

• Mental Health Act or Family Law Act?• NHS England is unsure if neurology services

are commissioned locally by CCGs or by national Specialist Commissioning

• 17 year old – now seriously stressed-needed a ‘doctors letter’ for the exam board

• Which doctor ? I asked …so teacher asked for a list of those professionals involved

• Listed 42 ,all kind, but uncoordinated.• 2 months later it had risen to 57 and

no better coordinated in spite of my asking informally and formally several key professionals to find a single case manager

• I had to take an Emergency Injunction to protect myself and my children

• Several judges and barristers asked why it had come to court, this man was ill

• I telephoned 4 residential homes from the court to find one to accept a man that evening for respite care. He was under 65 who could walk and self care but not prepare a meal or manage his affairs, so could not live unsupported.

What else could I have done differently?

If you were in my shoes would you have followed a different route?

Finding a pathway through services on a journey with

Huntington’s Disease

Dr Annette ScivierWife, mother and carer

GP for 20 years

Motor Neurone Disease

Louise Rickenbach

Regional Care Development Adviser Hampshire, Dorset, Isle of Wight and Jersey

•What is MND, facts and figures, briefly.

•What you need to consider in your role.

•How the MND Association can help.

I am going to cover...

With the help of

John’s story

John’s story

With the very generous permission from his family

Think about what your role would be, in his journey with MND

What is MND?

A progressive disease that attacks motor nerve cells in the brain and spinal cord leading to weakening of muscles.

• Terminal Disease

• Rare• Diagnosis

difficult

Motor Neurone Disease

Incidence: 2-3 per 100,000

Prevalence: 5-7 per 100,000 people in UK

MS incidence : 3-4 per 100,000

MS prevalence: 100-150 per 100,000

Hampshire population 1.7 million

• You would expect there to be 80-110 people living with MND in Hampshire.

• Perhaps 40 new cases per year

Look at your population size

Prognosis

David Niven

Average survival is about 2-5 years

The most consistent predictor of survival is the rate of progression

in the first year

30% die within one year of diagnosis,

50% within two yearsThis is relevant to your planning

Motor Neurone Disease types

• Amyotrophic lateral Sclerosis (ALS)Most common

• Progressive Bulbar Palsy (PBP)

• Progressive Muscular Atrophy (PMA)

• Primary lateral sclerosis (PLS)

2-5 yrs

<2 yrs

5-10yrs

>10 yrs

Prognosis

About 90%

• 90% of people have the sporadic form (just occurs, no family history)

• Highest incidence 50-70 yrs

• 50% are under 65 i.e. of working age

Benefits and finances are important

Personal Independence Payment

Attendance Allowance

Carers Allowance and assessment

Personal Health Budget

Direct payments

Continuing Healthcare

Employment Support Allowance

Access toWork scheme

HELP!

Previously fit, 67 yrs old Very happily

Married with four children

Had recently retired as a postman

Owned their chalet bungalow

His wife had back problems

Determinedcharacter

John’s story

Easter 2012

Stumbled on the stairs and fell in the kitchen.Attended A&E as thought to be a stroke.

July2012

Increasing leg weakness and referred to neurologist by GP.

September2012

Diagnosed with MND following investigations

“I was asked to come in for his appointment with the Dr’s. I realised that it was serious” (Wife)

John’s story

Dates are approximate

Some of the Signs &Symptoms

• Muscle wasting and weakness• Fasciculation (twitching)• Cramps• Spasticity (stiffness)

• Respiratory problems• Speech and swallowing problems• Saliva and mucus problems • Weight loss

Some of the Signs &Symptoms

• Fatigue• Pain• Emotional Lability• Fronto- temporal dementia• Cognitive changes

For his family, the diagnosis was a huge shock. His wife said that they were not aware at all of what lay ahead and tried to cope by themselves, solving problems and

borrowing equipment from friends.

“I wish we had asked for more

help”

Sunny visit to the Isle of Wight after the diagnosis

The family searched the

internet for any possible treatment

“We tried to keep things as normal as possible”

John’s story

Put in touch with the MND Association

Xmas 2012

John was finding the stairs difficult and they made a decision to make a bedroom downstairs. OT’s looked at adaptations and equipment in existing bathroom.

”John’s story

Spring 2012

John’s wife was finding it very difficult to do all of John’s personal care and pushing the wheelchair had

aggravated her own problem.

Son built a ramp

Family sourced a WAV

Easter2012

Frequent falls meant that his wife did not feel she could keep John safe.

Social worker and District nurse now actively involved

•Stair lifts•Funding routes.• MNDA grants.•DFG’s • planning delays.

What can Adult Services do to improve quality of life for people affected by MND?

• Understanding about the illness and it’s affects and challenges for the whole family.

• Holistic, sensitive assessment of the person and carers’ needs.

• Anticipatory and pro active planning

• No closure of case (or allow very easy re-referring)

• One allocated key worker or team

• Liaise and communicate with local health and voluntary services

“Prompt and timely intervention to prevent playing continual catch up, triage through the waiting lists and get out there.”

“Be realistic with the person with MND and their family about timescales, disruption etc. with regard to DFGs and any building work.”

“Re equipment: it is often difficult to advise about what is going to be needed but people and families are reluctant to accept the concept and need time. Remember what the MNDA can provide in some cases.”

“It is important to be aware of each others in-put so that there is a consistent and timely delivery of service.”

Some quotes...

Life goes on for John’s family

John’s story

But... It was becoming increasingly difficult to care for him.

Xmas 2013 Continuing Healthcare funding for a 24hr carer made it possible for John to stay at home.This was very important.

CHC funding is often difficult to get.

July 13 John needed a feeding tube (RIG) and Non-invasive Ventilation initially just for night use but increasing to 24 hours. He used an eye tracking communication device.

Dec 13 He had numerous admissions to hospital with chest infections. Palliative Care services now involved and he wanted to access all possible treatment to extend his life.

John’s story

Summer14 John found it increasingly difficult to communicate and his family and carer managed to understand his eye slight movements.

Autumn 14 The disease progressed and John was unable to move, was reliant on the NIV, and was spending more time asleep. It was very distressing for his family, who tried to make life as comfortable as they could for him. John became more sleepy and passed away peacefully in his own bed.

His family are still hugely affected...

How the MND Association can help• Support Groups, open meetings for people with MND and their carers, organised by branches and groups. (Portsmouth, Southampton & Basingstoke)

•Association Visitors

• Regional Care Development Advisers can provide advice and information

•Helpline (MND Connect), Website and publications.• Forums. www.proforum.mndassociation.org and www.forum.mndassociation.org

• Equipment loan and financial support services (where statutory services don’t fund, e.g. Stair lift, riser-recliner chairs)•Quality of Life grants

http://proforum.mndassociation.org/

APPLICATION FORM - REQUEST FOR MND SUPPORT GRANT The MND Association cannot use its resources to replace statutory responsibilities. In completing this application form, health and social care professionals should include supporting documentation demonstrating efforts made to secure statutory funding. Funding is limited, so applications will be assessed on the basis of need and impact. In signing this application form the professional confirms every effort has been made to seek statutory and other appropriate funding. Please email completed form to [email protected] We will not process incomplete forms. Referring professionals must ensure applications are fully completed and returned in a timely manner. We will contact the person with MND to inform them of the progress of the application. Please include ethnicity according to Department of Health coding. 1. DETAILS OF PERSON WITH MND

Full name of person with MND consenting to this request

Mr/Mrs/Ms/Miss/Dr/Other.....................................................

First Name: Surname:

Gender:

Male:

Female:

Ethnicity code: Date of diagnosis: Place of diagnosis:

(i.e. name of hospital/care centre) Address Postcode

Date of birth:

Contact details (if different): Name: Tel./Email

E-mail

Telephone

2. DETAILS OF PROFESSIONALS

Please return to: Support Services Team MND Association Email: [email protected] Tel: 01604 611802 Fax: 01604 638289

Office use: Date received: Date acknowledged: Decision & date: Date actioned:

Name of requesting professional

Job title

Address Postcode

Contact name and telephone/e-mail of a colleague who can be contacted if you are unavailable

E-mail

Telephone

Normal working hours when you can be contacted:

GP’s name and address:

Support |Grants and equipment loan

Form is on the websitewww.mndassociation.org

[email protected]

03453 751831

MND Connect 03457 626262

Support.services@mndassociation .org 01604 611802

Thank you

Collaborative Working

Dennis Morgan

Regional External Relations Officer - MS Society

Claire Kinnersley

Senior Practitioner and MS Lead OT HCC

Background• MS is the most prevalent Neurological condition in the UK for

young adults affecting over 100,000 in UK; 2165 in Hampshire (excluding Southampton and Portsmouth).

• People affected by MS in Hampshire highlighted poor access to services during a survey carried out by the MS Society in 2005.

• MS Society made Hampshire a priority area for Service Development.

• Engaged with OT Professional Lead for HCC to highlight the benefits of the MS Specialist role.

• Provided Impact Study carried out by Reading University provided the evidence required to secure the commitment from HCC.

Background

• Three permanent full time MS Specialist OT’s appointed by HCC.

• 50% funding by MS Society for first 3 years.

• 100% support from County Council’s - MS Society involved at every stage of appointment.

• Excellent Partnership Working developed as a result of the strong relationship.

Collaborative Working

• 3 Local Steering Groups set up to support the MS Specialist OT service development across the County.

• Representation from: MS Nurses, MS OT’s, OT Managers, MS Branch Support Officers, Service Users with MS Society chairing.

• Improved communication and good joint working between health, social services and the voluntary sector.

• Provided a focus for high quality service development and delivery.

Progress

• Services improved rapidly when Specialist OT’s came into post.

• Undertaking individualised holistic assessments, care plans and reviews.

• Positive feedback from people affected by MS to Health and Social Care Professionals and the MS Society.

User Feedback

• ' I have needed a lot of support with my husband who has many cognitive problems associated with his MS - the OT has been there for me and totally understanding about MS'

• ' I have had a variety of health problems including MS - the OT has been able to guide and support me to be independent and have a better quality of life'

• ' I would like to say how impressed I am with the knowledge on MS from my MS O.T. It is so important that there is a specialist in the community of this subject. We are all different and have different needs and without their help we would be in a very sorry state. My O.T. helps me each stage of the disease progress. She allows me time to heal mentally at each stage before giving me advice with my physical needs '

Developments

• Team of 6 Link OT’s with a special interest in MS created across Hampshire to ensure no post code lottery.

• Specialist OT’s provide co-ordinating and supporting role to the Link OT’s with quarterly meetings to cascade information, provide training, support and expertise.

• Sharing expert knowledge with other social care and health colleagues

• Central place for storing and sharing of information shared site on HCC server.

Outcomes

• Improved health and well being for people with MS. Timely assessment and intervention which aims to reduces the impact of the disease and prevents further deterioration

• MS Specialist OT’s working collaboratively with Health, the MS Society to educate people affected by MS on symptom management (e.g. fatigue) and signposting/referring to other services.

• Facilitating support and education in self management skills for people affected by MS

Other Improvements• Improve quality of life. Facilitate support and educate on

positive risk taking, using expert knowledge to ensure assessments take into account the fluctuations and unpredictability of MS

• Freedom from discrimination and harassment; Training for social care employees and care agency staff

• Maintaining dignity and respect; using specialist knowledge and understanding of the person affected by MS to implement timely interventions to prevent safeguarding issues arising

• Economic wellbeing; Reduce ‘revolving door’ syndrome for people with MS by offering continuity of care

Achievements

• Over 100 plus Care Agency Staff Trained.

• Supported and educated OT’s and Social Workers about MS.

• Joint working with health and Social Care colleagues on complex cases.

• Professionals Study Day

• Supporting people with MS and their families to maintain independence (management of the condition / adaptations to environment) delays the need for large care packages.

Rationale for extending collaborative working with other neurological organisations

ADULT SERVICES• Increased demands for services• Limited Resources• Financial Challenges• Integration with Health• Improved Services• Services more joined up

VOLUNTARY SECTOR• Working with the Voluntary Sector on other neuro conditions to

ensure that Adult Services access additional skills and resources available.

Summary of Report from the Neurological Alliance (September 2014)Is Localism working For People with Neurological Conditions?

• Neurological conditions have been poorly prioritised historically in the health and social care systems.

• Neurological conditions are unique compared to other Long Term conditions, they are often not preventable, fluctuate considerably, can deteriorate rapidly and last a lifetime.

• Many of the challenges faced by people with neurological conditions in relation to health and social care are similar.

• Collaborative working across Neuro conditions was found to have a positive impact on services.

Developing a framework for working collaboratively with other neurological conditions

• Updating skills, developing knowledge and competencies of a wider cross section of staff.

• Working with the resources in your specific locality.

• Coaching/Mentoring (MS Leads upskilling/joint working with colleagues)

• Training (Work Force Development) Neuro Conditions.

• PD Meeting (3 x a year) for OT’s, Social Workers, Health and Voluntary Sector Representatives.

ANY QUESTIONS

Light Lunch & Networking Opportunity

WORKSHOP ONE

There is a floorplan on the reverse of your programme

Social Care Perspective: Reablement & Long Term Neurological Conditions Main Hall

Health perspective: Rehabilitation in the Community White Room

Maximising Independence & Quality at End of Life Yellow Room

Maximising Independence & Early Intervention for the Newly Diagnosed Green Room

A new Social Care PerspectiveReablement and long term conditions

• Claire Kinnersley (senior Practitioner OT, MS Lead, North Hants)

• Michelle Logan (Acting OT Team Manager, New Forest)

Aims of session• To provide an overview of MS, MND

and Parkinson’s Disease• To Explore reablement in the

management of long term, progressive neurological conditions.

• To define our role within reablement • To promote importance of

collaborative working

MULTIPLE SCLEROSIS• Disease affecting the Central Nervous System

(Brain & Spinal Cord.• Myelin surrounds the nerve fibre (CNS) which

helps messages travel quickly from the brain to the rest of the body.

• In MS the immune system attacks the myelin so messages are disrupted.

• Causes is unknown (a number of possible factors)• Average age of onset 34 years.

MOTOR NEURONE DISEASE• MND is a progressive disease that attacks the

motor neurones, or nerves, in the brain and spinal cord.

• Messages gradually stop reaching the muscles, which leads to weakness and wasting.

• Cause is unknown. • Symptoms are managed to help achieve the best

quality of life. • Average age of onset – 43 to 52 years.

Parkinson’s Disease• Caused by a loss of nerve cells in the Substantia

Nigra, leading to reduction in levels of the chemical Dopamine.

• Dopamine plays a vital role of regulating movement

• Cause is unknown• Average age of onset 62 years.

MS, MND & Parkinson’s

What are the main symptoms of each condition and what impact can they have on a person?

Fatigue• It is more than just feeling tired. – invisible

symptom – overwhelming tiredness.• Appears suddenly and out of all proportion to any

activities undertaken.• Primary fatigue – due to direct result of damage

to the central nervous system.• Secondary fatigue – experienced as a result of

other factors: i.e. Medication, infection, depression, sleep disturbance

• Management of fatigue: pacing, rests, prioritise activities, plan ahead, posture management.

Spasms & Muscle Weakness• Normal muscle tone: Allows us to move,

overcome gravity and allows full range of movement.

• Two type of tone:• Hypotonia – low tone – joints are unstable and

therefore require supporting to be moved.• Hypertonia – high tone joints are very stiff. • Common features of Spasticity• Extensor and flexor spams (sudden movement)• Clonus (shaking)

What is posture?• Posture is simply the positon our body adopts in

response to the effect of gravity (in sitting, standing and lying down).

• No single posture allows us to carry out everything we want to do and we adapt many different postures in order to do different tasks.

• ‘Good’ posture allows us to move in the way we want, causing our bodies the least amount of strain and damage.

IMPACT OF BAD POSTURE• Reduced function• Muscle shortening • Increased spasms and spasticity• Increased ataxia• Pain• Pressure sores• Loss of Balance• Swallowing, talking and breathing difficulties• Problems keeping head upright

Speech and Swallowing• Communication: Articulating (slurred/slow/quiet

speech) and processing information (word finding). Changes in non verbal communication.

• Swallowing: Difficulties with eating and drinking– resulting in coughing and choking

• Referral to Speech and Language Therapist.Advice on:Communication aids, concentration/remove distractions, food consistencies/peg feed, time, environment, posture and fatigue.

Reablement for long term progressive conditions

What does Reablement

mean to you?

Reablement is about…..• Maximising independence• Establishing what is important to the

individual• Setting personal goals/plans• Using equipment/adaptations/techniques

as required• Programme of targeted intervention

where appropriate • Coordinating a collaborative approach

Person

CRT

Health

Voluntary

sector

OT

Physio

Social worke

r

Housing

Family

Sensory

services

•What is your role within Reablement?

•What are the benefits of a collaborative approach?

What do you need to develop a reablement/collaborative approach, to work with people affected by a long term neurological condition?

Any questions?

Thank you for your time

Break & Networking Opportunity

WORKSHOP TWO

There is a floorplan on the reverse of your programme

Social Care Perspective: Reablement & Long Term Neurological Conditions Main Hall

Health perspective: Rehabilitation in the Community White Room

Maximising Independence & Quality at End of Life Yellow Room

Maximising Independence & Early Intervention for the Newly Diagnosed Green Room